It’s a seizure-palooza!
Maria has been having a very bad week seizure-wise. For example, yesterday the school said she had 26 seizures over the 3.5 hours she was there; earlier in the week she had a 40-second seizure (they are usually half that) that had the teacher ready to call the nurse. Today she had music therapy before school and had about 15 seizures during that hour so Cathy kept her home.
The neurologist continues to be unhelpful. It’s been only two weeks since she’s seen Maria, yet she didn’t remember anything about her case, her type of seizures, whether she’d been in the PEMU, etc. The pediatrician consulted her because a blood test showed Maria’s Trilepal levels were about 1/10 what they should be, which is odd when you are taking 2/3 of the median dose. The neurologist just dismissed that saying it was a fluke. She did say to increase her dose over the next few days, bringing her up to the median dose.
In the meantime, Maria has given all of her caregivers a cold. I’ve gotten over mine, but I’ve been away from Patient Zero for a week. I’ll probably get sick again after taking care of her tomorrow. She, meanwhile, just keeps getting re-exposed at school so has been sick pretty much as long as she’s been in school.
In addition, Maria also isn’t sleeping well. Lack of sleep is a HUGE seizure trigger. Between that, the cold, being in school, and life in general she is pretty stressed right now. Needless to say, her mama is pretty stressed too.